Horrors of High Dose Chemo

It has been two weeks since Skye started his High Dose Chemo. He remains in isolation on Kamran's Ward, with very close monitoring from the medical team. Putting it bluntly, this has been a traumatic phase of treatment. What Sally and Skye have been through, and are still going through, is pretty nasty. Seeing him huddled on the bed in foetal position, not really wanting to move, is soul destroying. At other times, which we think is quite positive, he demonstrates his fighting spirit by bellowing at anyone in his room, even if they haven't caused him any offence. Or is standing in front of his fan an offence? Probably!

Today, he has had a number of nose bleeds and we think, in the throat, but it is difficult to tell where it is coming from. ENT consultants were called in to assess due to the severity of them. He requires constant assistance with copious quantities of mucous and saliva, which literally pours out of his mouth. Because of all the mopping up, his lips and face are breaking down and keeping these moist and in decent condition is a real challenge. The change over the past few days has been noticeable. He is in a lot of pain, and they have moved him from Morphine onto Oxycodone (fewer side effects but more expensive), which we are able to administer at the click of a button. On the positive side of things, he looks as though he has been on holiday in the Caribbean for a month. His skin has gone a dark brown, and no he is not dirty! His bathing routine has changed from 4 times a day, down to two, which is much easier. Unplugging the machines and wheeling everything through to his en suite so that we can wash him, Sally has got down to a fine art.


He is incredibly weak, and cannot now stand unsupported, but he has his daily exercises which he has to do in bed to keep his musculature in as decent a shape as we can. He has a sticker chart for everything from mouth cleansing to bathing to physio exercises. This morning, he was on good form (all relative), and managed to make badges for the doctors on ward round, (lasting about 10 minutes), but it was just afterwards that things started deteriorating. Dad has learnt how to work a Wii console, whilst Skye is just happy to lie and watch as I hack my way around the mountains as Indiana Jones. It keeps him distracted for small periods of time, which is better than nothing. Over the weekend, he was having a go, and doing really well, but he just doesn't have the energy now. It is hard to believe that 3 relatively short infusions of Thiotepa on the 12th, 13th and 14th of Feb have caused this much damage. Since then, it has all been about recovery. He has had transfusions of blood, platelets, and the all important stem cells, along with a host of antibiotics and other drugs. For the first time today, there was a hint of recovery from his neutrophils, and we hope that this continues to be the case in the coming days. He has a long way to go before we can consider thinking of home, so for now we simply wait and see. There have been challenges over the past two weeks, which are not appropriate to put into writing, which have demanded enormous strength of character and resources, particularly from Sally. It has been a vile experience. Other parents who have been through High Dose, talk about the 'horrors of high dose', and they are not wrong. When Skye stops bellowing and in a quiet, begging voice starts saying please and thank you, you know things are pretty tough for him. As ever, we are incredibly proud of him for enduring such suffering, and we hope and pray that this is indeed doing what it is supposed to be doing. To go through this for no reward, would be heartbreaking. We fight on!